Saturday, January 30, 2010

Happy Snowy Saturday! We got snow in North Carolina! It's very funny how different the atmosphere is when it snows in North Carolina as opposed to snowing in Indiana. This amount of snow probably would not even close schools out there yet no one was out and about today down here and a lot of restaurants were even closed. Dad braved the storm to go out and give platelets this morning at the red cross center. They were very excited that he made an appointment and came because they had so many cancellations because of the snow. Keeping a full schedule of platelet donors is important because platelets cannot be frozen and only have a shelf life of 5 days! So if there is a day or two with no donors that's a big deal.

Speaking of platelets I received a bag of platelets on Friday at the clinic and that was all. All my other counts were acceptable to get me to Tuesday. So I have a few days off and then go Tuesday to have my fourth and final treatment of this cycle. We do not know how long there will be between the first and second "cycle" though, the protocol for the study is vaguely written so that the doctor can decide. So hopefully we will find out more soon. I also have another biopsy sometime this week.

Michael made it to the Netherlands at about 3 am this morning and "called" me on the computer. He said the flights were good and didn't seem too long because he watched two movies. I will have lots of company this week to keep me occupied. Dad is here now, grandma will come tomorrow or Monday depending on the weather, and Aunt Mary Beth flies in on Thursday so it should be a great week spending time with family.

Enjoy the snow (safely) and thanks for always being there!

Tuesday, January 26, 2010

Good Afternoon - treatment #3 went as planned today. Still no nausea/vomiting, etc. just low blood counts. I got a three course meal at the clinic today with the treatment drug plus platelets and red blood cells. This will get me to at least Friday. There is some good news from the bone marrow biopsy last week. The biopsy I had BEFORE starting treatment shows about 90% blasts (immature cells that the cancer had made). The biopsy AFTER the first treatment showed about 50% blasts so that is very encouraging news.

On the non-technical front, my energy level is rising but it's a catch 22. With more energy I get more stir crazy sitting at the apartment. My white counts are very low so going out into public is a "no-no".

Hope all is well - Amy

Friday, January 22, 2010

Hi All! There isn't much to post about but thought I would say hi. This week has gone very well. I had clinic appointments on 4 days because of the required bone marrow biopsy on Wednesday. Hopefully they will get me on a better schedule so I won't need to go as often. However, they gave me platelets today and I do not have to go back until Tuesday. I will get my third treatment on Tuesday as well. There are 4 total treatments in a "cycle" so in a few more weeks we should know if this medication is having an effect or not.

Michael is leaving Friday the 29th for the Netherlands. He is going with several others from his lab to a physics institute to run some experiments on a very rare machine. They will also spend a few days in Amsterdam and Brussels sightseeing since they will be so close. He's really looking forward to it and I just wish I could go :(... someday! So pray for safe flights and train rides for him.

Much thanks, Amy

Tuesday, January 19, 2010

Good Afternoon. I got my second treatment this morning. All went well and I didn't have to have all the pesky EKGs during it like the first time. I also received some platelets and potassium today. I really haven't had any side effects from the new drug yet. I've had some nausea but that usually corresponds with taking my antibiotic (cipro). I'm still very tired but I think that is getting better as well. I have to go back for a bone marrow biopsy tomorrow. This is part of the protocol of the trial to keep track of everything.

It was nice to have the weekend off to rest. Joleen, John, Teagan, and Phyllis (W.) came down yesterday. We had a wonderful visit and Teagan entertained us all rolling all over the living room. Who needs to crawl when you can get there rolling?

As always, much thanks!

Wednesday, January 13, 2010

Hello - I know I should have updated sooner but my energy level has really dropped from low to very low this week. My hemoglobin and hematocrit were pretty low on Tuesday so I will probably get some red blood cells when I go back on Thursday which should help.

I did get the trial drug yesterday, it's called STA-9090. I didn't have any reactions to the drug while getting it and haven't had any side effects so far. Yesterday was very stressful though because my appointment was at 9:00 and the drug did not get there until 12:30. In addition, they had to do EKGs and blood work before, during, and after the hour I was getting the drug. I was very tired and I felt like every time I was almost asleep someone came in wanting to do something else to me.

Yesterday was also mom's birthday so we joked that hopefully what happens on her birthday works better than what happened on my birthday (transplant). Michael also started school this week. This semester he has to teach two general chemistry labs and take a class on top of his research responsibilities so he's going to be busy. However, he has always been a "workaholic" and enjoys being an official Tarheel even though it brings more responsibility.

As always I hope you all are well and having a good week,

Friday, January 8, 2010

Happy Friday Evening! It's been a long day. Mom and I left the apartment at about 9:45 this morning and got home at about 7:15. The bone marrow biopsy was not very painful at all today so that was good. They gave me both red blood cells and platelets. When they first took blood this morning my red blood cell count came back very, very low but I was not feeling tired and my blood oxygen level was very high so the nurses weren't sure about it so they redrew my blood. The second lab came back at a much higher number that seemed more correct for the way I was feeling. However, they had already ordered red blood cells so they gave me one unit. This should give me extra energy for the weekend!

I'll go to clinic on Monday to check my counts and see if I need any infusions and then I will go back on Tuesday to get my first dose of STA-9090, the trial drug. I'm glad we have a plan in place and I get to start treatment.

Last but not least I wanted to mention that January is National Blood Donor Month. I've received A LOT of red blood cells and platelets over the last year and all of it came from volunteers. I remember my grandmother always going to "the bloodmobile" when I was little and I always thought it was so boring and that she worried too much about fitting it into her schedule. Now I obviously appreciate everyone who takes time out of their day to give blood. I put a link to the red cross website on the right side of the blog. If you go to that website you can enter your zip code and see if there are any blood drives near you. There is a blood drive at the First Christian Church on Fudge Street in Covington on Tuesday (1/12). Dad promised me he would go. I have no idea how these things work though (if you need an appointment, etc.). If anyone does know please post a comment letting us know. So if you have some free time Tuesday that is something to check into.

Have a wonderful weekend!

Thursday, January 7, 2010

Good Afternoon!

I had a clinic appointment this morning and didn't need to be infused with anything. My platelets are really "hanging on" as the nurses say. They infuse me when I get under 10 and they were still at 32 today after having an infusion on Monday. However, I do have a busy day tomorrow full of things I have to do before starting the clinical trial. I have to go to the clinic at 10:30 for a bone marrow biopsy. Dr. Rizzieri is actually going to do it since his PA is on vacation so we'll see how the "expert" does. I think this makes number 9 or 10??? I have lost count. They will probably give me platelets tomorrow as well so that I can have the weekend off. After the clinic visit I have a CT Scan of my chest and an echocardiogram of my heart. Neither of these procedures are invasive or anything just time consuming. Since this is a new drug they want to monitor closely how it affects different organs so a before "picture" is needed.

I will start the trial next week. Someone had to drop out of the "first round" so I will get the lower dose which I was a little disappointed about. However, this means I get to start treatment sooner which the doctors thought would be best.

Chris, Kelly, Christian, and Adam are coming down this weekend and I cannot wait to see "my boys" (and Chris and Kelly too). I'm sure seeing them will help my mental state a lot. Both Adam and mom have birthdays next week so we're getting a Coldstone cake too (I get excited about the little things at this point).

Hope the week is going well and thanks for EVERYTHING,

Monday, January 4, 2010

Hi Everyone,

We have some good news! I was accepted into the clinical trial. This is for a new drug that attacks a protein that is commonly connected to leukemia cells. From reading the information on the study it doesn't sound like it will completely wipe out my leukemia but it may reduce the percentage of leukemia of cells in my bone marrow so that another treatment may wipe them out or I can get a boost of donor cells. (I have not been told this, this is just my assumption from reading the info we were given). This drug has been found to work well with solid tumors so we are hopeful that it will work on a liquid tumor like I have. This is phase 1 study which means they are trying to find the best dose. Luckily I am in the second part of phase 1 and get the larger dose. I will get the drug once a week for 4 weeks and if I respond well to it with minimal side effects I can continue it in 4 week cycles.

I had a clinic visit today and received some platelets and do not have to go back until Thursday so I have another two days off! Physically, I'm feeling very well. The pain from the shingles has really gone away. I was on oxycontin for a few weeks for pain and I forgot to take it one day and had no pain so I stopped taking it and now I feel much "clearer". A lot of the last few weeks including Christmas is a "blur" to me. Mentally, I'm positive and happy but having a hard time with the big picture of things, so please pray for me in that respect.

This weekend we switched a lot of furniture to our furniture from our house in Indiana and brought down a lot of our stuff. The apartment is a complete mess because we're still unpacking boxes but it already feels so much more like home. Our house in Indiana will go on the market in mid-January and we hope it sells quickly (yet another thing to pray for).

Hope all is well with everyone and the new year (I can't believe it's 2010) is starting out well, love and thanks to all,